CARRY YOUR LIGHT

An account of our adoption and a continuing advocacy for orphans not yet home.

'For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me,I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.’ Matthew 25:35

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Tuesday, December 29, 2015

Where to begin? The time has passed, so much time. We walked through a storm without being able to see the path in front us. It was (and continues to be) new terrain that needed to be crossed, charted, and endured. Every single foot of that terrain was cried over, fought for, and hardened us for the next step.

What we lost on the journey and gained on the journey is unclear. But all of a sudden, it just doesn't matter. What we thought this battle would be, what rations we would take, where we thought we would find supply posts, how many days we thought we could sit in a trench, where we would find the enemy, and what we thought we would do when we met the enemy...all those expectations, I finally stopped shouting those expectations to God. That is where we have been for 18 months. Building up, breaking, spilling over, again, again, and again.

The Stats

M has been home 2 and 1/2 years. She is eight and a half years old. She weighs 19 kg, is 105cm, and is wearing a 5t. She came home one day shy of her sixth birthday wearing a 2t, weighing 12.4 kg, and was 98cm.

Medical, In a Nutshell

M has been given the diagnosis of intractable epilepsy. What does that mean? That means the traditional medicines aren't going to work. Doctors are admitting this now. We are at palliative care in terms of seizures. We can hope to lessen them, but she will always have seizures.

During a sleep study, a modified EEG revealed her seizures are
probably originating from the frontal lobes and spreading to her entire
brain resulting in the tonic-clonic seizures we see. Frontal lobe epilepsy (FLE) affects individuals of all development
levels and scientists know very little about the frontal lobe and it
purpose. This discovery doesn't give us a prognosis. However, it
validates our experiences. FLE causes very strange behaviors when
individuals are having seizures. Apparently, individuals can be
misdiagnosed and referred to psychiatrists, when they start
experiencing seizures in the frontal lobe. Vocal outbursts, laughing
fits, crying fits, repetitive jerking movements, pelvic thrusts can all
be the signs of seizure in the frontal lobe.

The sleep study revealed M had extremely fragmented sleep, and was
never getting to REM sleep or to deep sleep. Only stage one and stage
two sleep. And of that sleep she was only getting 2.5 hours! The data
showed that she was "awakening" every 10 minutes!! Can you imagine only
getting 2.5 hours every night for years? M had a tonsillectomy to widened her airway for improved breathing and thus improved sleeping. Her breathing is still impacted by excess floppy skin around her epiglottis and larynx but she seems to attain borderline normal breathing by sleeping on her stomach, so we will not be having surgery at this point to remove that skin.

We have worked our way through five different epilepsy medications (depakote, keppra, lamictal, zonisamide, benzel) with their own array of side effects and withdrawal symptoms. I believe that they must work for some people, but for the past year they wrecked our daughter. Last September, M was learning to ambulate with a pediatric walker. She was still seizing regularly so we tried a new med. Slowly, very slowly, imperceptibly, her seizures got worse. Then she got worse. She stopped trying to walk, to stand. Over the next 8 months she started losing weight, was dizzy to the point of falling during crawling, and became extremely emotional. She had lost 3 kilograms of weight and was getting slated for another g-tube insertion in August. Seriously, surgery to place a feeding tube (again!) was on the calendar. It was a nightmare.

The process for epileptics concerning medication seems to be:
1. start with the medication with the least side effects.
2.
gradually increase to the highest level possible, while checking blood
levels for liver function, kidney function, and the rate of metabolizing
the medication
3. if not seizure free and can't go any higher on the dosage, start a new drug
4. while starting new drug, slowly wean off of old drug

We had asked about the ketogenic diet. The ketogenic diet clinic was closed to new patients because of staffing. Staffing. It wasn't that M wasn't a candiate. It wasn't that it would not rescue our family from this nightmare. It was staffing. Because the normal protocol wasn't working we got transferred from the Neurology department at Children's to its subdepartment of Epileptology.

Bruising from M repeatedly losing her balance and slamming her chin into the ground while crawling (at the time she was on zonisamide and lamictal)

By the time the first appointment with the new epileptologist rolled around, Paul and I had gone rogue. We had started M on medical marijuana prescribed by a naturopath that is low in THC and high in CBD. We had started the Modified Adkins Diet (<10g of carbs a day, and unlimited fat and protein). I don't want to present carelessness. Because it wasn't haphazard. We spent hours researching the diet. We read NIH articles. The British Medical Journal studies. epilepsy.com I researched late into the nights and then laid awake trying to make sense of it all. Ultimately, we were lead to stop all traditional medications in April 2015. The neurologist we had been seeing threatened us that M could seize to death. But this was the path; this was divine.

I think it is interesting that the threat the neurologist presented to
us was death. First of all, we are Christians. We have professed that
death has been conquered. It has lost its sting. I would see my
daughter again. She would be more complete and well than I ever expect
her to reach in this life. Second of all and universally, was M really living?
She was in agony. She was medicated to the point of not being able to
sit up or eat enough to sustain her body weight. Emotionally, if she
had been cognitively capable, she would have been suicidal. Does death
sound threatening in these circumstances? We were being merciful. And
we did keep the medical team informed of our medication changes and kept her rescue seizure medication on hand.

Last days of School June 2015

The first day of withdrawals M screamed for two hours. The pain of the withdrawal symptoms was incredible for her. We had stepped down one pill. One of eight. We had Oxycontin left from her tonsillectomy and we administered it. Within twenty minutes she was asleep. School would be finished within 4 weeks so waited until then to continue peeling off pills. After that night we established a routine with the detox. No faster than 1/2 pill decrease every two weeks. Three days after every step down, M would have a day of seizures. And only on day three. Pain was managed with motrin and tylenol. We started charting the theoretical levels of the medication in M's system so we could understand how the rate of decrease affected the withdrawal symptoms. If the rate of decrease was too steep, M would have terrible withdrawal pain.

Chart that we used to track the blood levels of the zonisamide

In the above chart, we tracked the levels of zonisamide in M's plasma and red blood cells. The blue line indicates plasma in which zonisamide has a 63 hour half life. The orange line indicates red blood cells in which zonisamide has a 106 hour half life. You can see we started zonisamide in January 2015 and reached it peak at about May 12th; she was taking 200 mg (8 pills) at that point. We then started detoxing. As mentioned we decreased 1/2 pill every two weeks. Towards the end you will see a darker orange line and a darker blue line. We deviated from the routine by coming off quicker as she was displaying less withdrawal symptoms as she got closer to taking zero pills.

At Mt. Rainier, in middle of detoxing off of Zonismide.

Since stopping all traditional medicines, M has gained back all her weight and then some. She is not dizzy and seems more lucid. The combination of diet and CBD seem to hold the seizures at bay as well as they ever have been. She is now experiencing about 1 daytime seizure every 4 weeks. At its worst we were seeing several seizures a week. Nocturnal seizures are still a regular problem as they seem to be a different sort of creature.

What was the first epileptologist appointment like? He introduced himself and then proceeded to share why he was going to be following M's case. We had been mis-managed, in his view, by our former neurology team. M had been on too many medications at too high of a level! We could continue the medications if we wanted, but they weren't going to work. What God had presented us with in April, the epileptologist confirmed in August! Under the former neurologist team, we had performed some follow-on genetic testing including an epilepsy panel. This panel closely examines a genome for specific mutations that others with epileptic syndromes have had. The results were back with mutations found on SPTAN1 and two copies of her KCNT1 genes. Mutations on these genes have been associated early infantile epileptic encephalopathies 5 and 14 (eiee-5 and eiee-14).

Waiting for the bus, October 2015

M's mutations are different than any other recorded mutations on these genes. In other words, her genes are "wrong" in different ways than others' have been "wrong." The epileptologist feels that these differences are significant in the diagnosis and prognosis of M's encephalopathy. While she has some of the same symptoms (severe developmental delay, no methods of communicating, hypotonia, frontal lobe seizures, tonic-clonic seizures) of the documented eiees, if she had the identical encephalopathies, she probably would have died in Bulgaria because children in the US are hospitalized from birth due to complications of these encephalopathies. So it is unlikely that research into these encephalopathies (eiee-5 and eiee-14) would give an accurate picture of M's prognosis. We were presented with some hard-to-swallow odds. 1 in 20 people with intractable epilepsy and severe developmental delay (a marker of brain dsyfunction) will die from Sudden Unexplained Death from Epilepsy (SUDEP.)

Developmental

M's development is exactly where it was in the last post. Complicated by the neurology medications discussed above, we feel like we lost most of the year battling side effects. Side effects that left her sick and unable to even try to perform new tasks. I do think that some of the effects of the orphanage have lessened. Her eye contact and sensory dysfunctions have seen some minor improvements. We'll see what the next year brings.

Surprisely, she really liked being up on Paul's shoulders. She seems to like bumpy rides and actions. She will lay on her side and roll her toys into the wall to feel the slam and then giggle. October 2015

Comparisons are never healthy, this I know, but I've made them
between M and others from her orphanage. M's needs didn't seem as
severe as others, yet her development doesn't seem to be faster in any
sense. We have read about others coming home and learning to say
'mama,' learning to walk, learning to feed themselves, or just becoming
solidly happy. The term I hear often used is: 'a joy in their family.'
M hasn't made such obvious progress.

Overall, she is
still about 9-12 months old in her development. She is pulling to
stand. She is eating purees with a slightly lumpy consistency. She is
learning to use a pediatric size walker; we steer the walker and she
pushes it along. (The gait trainer did not work for us, as it is too
large for her to maneuver in our home around furniture and through
doorways.) She can handle about 15 ft using the
walker before she tires. It was raised at an appointment by a practitioner that we should really consider whether we want her to learn to walk independently, given that her cognitive age doesn't seem to be increasing. For safety reasons, we may not want her to be standing at counter heights to pull things down on herself or to be able to wander through a house. That would require more eyes on her and make the job of keeping her safe more difficult. An ugly reality there.

Her verbal skills remain the
most delayed to about a six month old level. We believe her receptive
language is about 10-12 words. We haven't
seen any improvement in her spoken language; all advancements there seem
to be fleeting.

M became a sister again in January 2015. We gave birth to another little girl. They are cute together. At this point they have about the same interests in toys. It is bittersweet when our newest addition is surpassing M's milestones, already.

Christmas Morning 2015

Emotional and Behavioral

M is exhausting to deal with. She whines, cries, and melt-downs often. See below for an video clip of her vocalizations. We hear this noise a lot and it still causes my blood pressure to go up, so at some point, after trying to ascertain why she is upset, I take her up to her room for a break. Smiles and giggles STILL bring us in from a neighboring room to see what she is reacting to. Sadly, most of the time it doesn't have much to do another person. We do not know what her underlying medical condition causes and what is institutionalization. We do know this behavior is called emotional lability, or Pseudobulbar affect, and is a symptom of brain damage. We are hoping for support from the Psychiatry and Behavioral Medicine clinic at Seattle Children's in 2016.

Another Pleven parent's blog, 'The Blessing of Verity,' had an excellent post discussing their daughter's development after reaching the four year anniversary of coming home. Her description of Katie sounds a lot like M. She is further along in all aspects than M, but hopefully in another 1.5 years, M will be there too. Anyway, she discusses "learned helplessness" as part of her struggle with Katie. Basically, being subjected to trauma that is incessant, and illogical, a person decides that nothing they do will stop the trauma from reoccurring. So they do nothing. As Susanna details with Katie in eating, we see with M in all areas. Even though the bowl of food is sitting in front of M and she is crying for it, she will not attempt to touch it. She will not attempt to crawl out of a room if there is a noise that she doesn't care for. She just tantrums in both scenarios. Frustrating. Research into the studies on learned helplessness show that the only method for overcoming these tendencies is to repeatedly have the person do a action with help to get a sense of success without trauma. So that is what the approach we just starting taking with M and holding her sippy cup. She completely loses it on me while I hold her hands on her cup and together we bring it up to her mouth.

As Parents

Being a parent to a child with special needs is very isolating. We can not go out as a family because M can not tolerate most community settings either because sensory issues interfere or there isn't a way for her to participate. Car rides beyond twenty minutes can cause meltdowns. Crowds and noise will cause meltdowns. It just isn't worth it to take her. So someone always stays home with her.

Getting help for M within the home, or "services" as they are referred to, has been a struggle, but we are seeing some fruit from that endeavor. Essentially, I had to call our Developmental Disabilities Adminstration case worker and just be honest. We are near crisis. We need help to continue caring for M. We were able to get one week of respite at Pope's Kids Place in Centralia, Washington. It is a great place staffed with RNs in a home-ish setting. We felt completely comfortable with M there as they could handle all emergencies surrounding seizures. We needed that break and have a second break scheduled for January, which will use all our currently available resources through DDA. Two and a half years of around the clock care is exhausting. Realizing that this may be forever scares me.

But maybe you are reading this thinking "what is the big deal? How is this different than being a parent to a
typical child? I have to give around the clock care to my typical children. "

Examples of how M is different than a typical child:

M is 100% dependent. She obviously can't walk, can't talk, can't feed herself, can not perform any hygiene tasks. Think about everything you do for yourself and now needing to do it twice: once for yourself, once for her. Essentially you have to live two lives, yours and hers.

M has had 343 medical appointments since coming home July 2013. That is not counting therapy. That is every time a new provider walks into the room. Included in that count are 67 pharmacy pickups. That is a medical appointment roughly every 3 days. Fortunately, we can make a day of it and get like four appointments done back to back.

She does not have the capacity to be reasoned with; tantrums happen and just have to be waited out.

M is now at or above 40 lbs. Physically lifting her is hard. She does not hold on so it is "dead" weight.

Installing equipment to lift her and transport her is expensive but a necessary step we will have to take.

She seizes at night regularly and although we don't get up for all of them, our sleep is affected by listening for them.

She can't eat what we eat. Every meal has to be pureed and has to have less than 3-4 carbohydrates a meal. So her recipes require label reading and a calculator. We batch prepare and freeze them in individual servings.

With medical appointments, comes medical insurance and medical bills. Often we're are calling the insurance asking for help accessing our benefits when the process gets stalled due to errors in billing.

All our children start off life 100% dependent. But as a parent you generally look ahead and know that it is a season. Babies are endearing because they are little, cute, and needy.

Instead, while we don't have a prognosis, at the current pace, she will never be
able to toilet independently, take medicines independently, dress
herself, wipe her own nose, understand safety within her environment,
get into a car, tell someone what she wants, etc. Imagine a 40 year old woman that is like a baby. Now add to that image a 40 year old woman that will always need a medical and social services advocate. It is scary and completely overwhelming to realize this is the future as far as I can see it. My stomach tightens. My breathing becomes shallow and I begin to worry.

Furthermore, we still need to do all the other stuff in life. Like clean and maintain our house, cook meals, do laundry, hold jobs, meet our needs as spouses, individuals, and parents to our other children.

I don't think I can tell this story without it sounding like a pity
party. We don't need pity. We do need understanding and help though.
In 2016, we hope to draw on respite care and get more help for M within
the home. We hope to get to tasks that have been put off for the past 2
and 1/2 years. Our deck is badly needing replace as the boards have
rotted. We need to start planning for a bedroom and full bathroom
downstairs for M to make her physical care more manageable for me.

In Closing

There are many things we worked through this year. I look back at previous posts and I feel foolish. I actually feel foolish talking to other people about M as well. I imagine they are thinking "What did you expect?" We expected her to make gains faster. We thought we could believe the referral document on M at the start of her adoption when it said "Had a seizure at age 2 1/2, was started on medication, and never had other seizures." We thought we could look at others' adoption as a basis for our own.

I said I had been angry with God. Yep. I've tried to negotiate with God. I've given him my final offer and asked for him to take it. I've told him I'm done. I told him I think He is a liar. He didn't equip me. This was too much for me. Interestingly, I'm not angry anymore. I guess we are the in the
acceptance phase of grief?? Sadness still comes regularly to play
though. I continue to pray for joy and to give more of me without
frustration, impatience, or martyrdom.

If it is hard, is it of God? If it is hard, why doesn't He make it easier? Why doesn't He heal her, wouldn't that be more of a testimony? Why this child?

Her quality of life is better. She is safe and she is shown love. But I don't know if we are better, as life would be easier without M. We were obedient and every morning we get up, place our feet on the floor to do it again when, from this post you can tell, we don't want to do it anymore. We have learned more patience. We have learned how to prioritize and identify distractions. For practical examples: I'm not on Facebook anymore, I don't apply makeup any longer, and rarely is my hair styled beyond a ponytail or messy bun. I don't say any of this as a prideful statement: "look at what I'm giving up." Rather, if you see me looking undone and wonder "what in the world is going on in that family?" "That mom doesn't care about her appearances..." or "getting a little frumpy..." ;) Be kind and know it is a conscious decision to meet all the other needs around me. Ultimately, living in the trenches doesn't allow for those. We are continually trying to cut out the superfluous and live according to our marching orders.

It is true that I wanted an adoption. I pointed out to God that I had
wanted a different sort of adoption; and quite frankly, I still long for
another chance at a different adoption. One that would have adoption
struggles, but not all this. One in which the child in the story gets
better. Where I can point others to adoption, and say "see, if you adopt
a child with severe special needs they get better and they are a joy. "
(Cause that is what you see on the other blogs, right? That their child
with special needs is a joy.)

If God is going to use us to tell an adoption story, will it look like a story without the happy ending? Just a story of one-foot-in-front-of-the-other obedience. No identifiable earthly rewards? Remember the friend that didn't survive the cancer, that marriage that didn't survive a betrayal, and yet another's pregnancy that didn't end with a healthy baby...our story may not end the way we hoped. Can we be satisfied with that?

I enjoy, almost sipping on, Ann Voskamp's blog and I am now slowly making my way through her book. I read this scripture reference in her book (pg. 88), when she is addressing her questions on pg. 85 "What is good? What counts as graces?":

"The Lord of hosts has sworn saying, “Surely, just as I have intended so it has happened, and just as I have planned so it will stand..." Isaiah 14:24 (NASB)Very similar to the more popular Jeremiah 29:11 that I often seen written as the New International Version:"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." I prefer the Isaiah passage. I think I hear in it the weightiness of God's decisions. It acknowledges the difficulties and still gives comfort that this isn't for naught. It is His.

Ann goes on to say "...and I won't shield God from my anguish by claiming He's not involved in the ache of this world and Satan prowls but he's a lion on a leash and the God who governs all can be shouted at when I bruise, and I can cry and I can howl and He embraces the David-hearts who pound hard on His heart with their grief and I can moan deep that He did this -- and He did."

Monday, April 14, 2014

This post was a hard post for me to be satisfied with. I let it hang over me for a long time before I felt it was ready, I suppose, for the same reasons that I have a little bit of an awkwardly long pause when someone asks, "How are things?" It is complicated. I hesitate because I don't want to portray the situation as unbearable or regrettable. I don't want adoption to look horrible or like something we are not blessed to be walking through. Things aren't bad. M is doing fantastic in the scheme of things. Nine months home. 3-6 months of developmental growth. Six pounds of weight gain. I'm told by therapists she is doing "amazing." Well, just read. It's all there. Still, this post highlights a mindset shift. A shifting down of the gears that brings us to steady walk. And as you read, please, please keep in mind we would do it all over again in a heartbeat!

My continued thanks for all those who do ask of us, text us, call us, and seek us out, even when my answers are awkwardly delayed, muddled, rambling, uninspiring, and repetitive. I can't tell you how much better I feel, just by speaking out loud what I am thinking and fretting over. It helps every time.

Nutritionally

Now you see it,

now you don't.

That's right!! We graduated from the gtube! M started eating, drinking, and taking meds exclusively by mouth the week before Christmas! We removed the gtube at the end of January. Hee-hee. Yeah, we don't mess around with unnecessary gtubes.

How did this happen? Well, I was fed up. Up until the week before Christmas, M was taking everything through the tube. She would fuss with any food coming towards her mouth. It just didn't settle well with me that she had the physical ability to eat, her teeth had all been fixed, and she was still refusing to eat. Occupational therapy (OT)/feeding therapy encouraged us to just continue offering her food and have her around when we had meals to allow her the choice to start eating by mouth. That was getting us nowhere.

Fortunately, a lot of Pleven families have connected via a Facebook group. Other moms shared their routine on eating and their hearts for their children overcoming eating obstacles. One mom included a thought that instantly spoke to me and allowed peace in my next pursuit with M.

"Sometimes
what the "real world" views as compassion is not something we can do
in their way as adoptive mothers. We have to do what is best for our
children and sometimes
it may seem harsh to the outside world, but I think God helps us to
know what is best for our kids. As I force my son's mouth open to take a
bite of food until he remembers how to do it, I know it is done in
love."

So....wow, yeah, exactly right. So the next day, we started the new feeding routine. I had been brushing M's teeth for several months and under the direction of the dentist, she had told me to slide my finger along M's lower jaw, insert my finger between her jaws in the back (where there are no teeth) and she would be forced to open her mouth. It had been a struggle in the beginning, but M had started recognizing the toothbrush, opening her mouth and allowing me a quick brush. So if it worked for toothbrushing, why not try for food? I repeated the same advice and then slipped a bite of food in. She didn't like this routine. She cried. But she had cried with the OT plan too. After she swallowed, we did it again. She cried more. The first day was the worst. The second day better with fussing and her angry. The third she would open her mouth most of the time and then test me on other bites, where I would again need to open her jaw. By the fourth day, she did it all by herself. She wasn't enjoying eating, but she was doing it! Now, however, eating is good. She loves it. She eats anything blended to a complete puree. Yogurt is her absolute favorite. I'm happy for her! She gets to enjoy for the first time a basic necessity and a pleasure in life! Not to mention, eating by mouth will really pay off in the speech department by increasing tone and awareness.

Our Christmas Card 2014

'Gifts of love and time are surely the basic ingredients of a truly merry Christmas!'

Neurology

M's seizures continue to become more frequent the longer we are home. We are now seeing at least 3-5 seizures a week. Those are just the ones we catch, so that number is probably higher. This past week has been particularly scary as we reached 11 seizures within seven days, with three in one night, and that night we came close to using her emergency medication and then needing to call 911. Fortunately, we felt like she was coming out of it, and we were correct. Her seizures are still while she is sleeping, but have migrated to daytime napping as well.

Early morning seizure care, during postdictal stage

We have undergone medication changes in effort to decrease the seizures. We came off of valporic acid (Depakote) which has taken away many side effects, and added in Lamctil and Keppra. The neurologist admitted that M is unique and they don't understand why she is seizing. She used the word "progressive" at our last appointment; "progressive" still just a possiblity, but obviously, not what we wanted to hear. We are awaiting the results of a sedated MRI, EEG, and a lumbar puncture that M recently underwent. This MRI looked at a different slices of her brain than the last MRI and lumbar puncture examined her neurotransmitters.

Endocrine

M's growth hormone level has come back into a low normal range!! Back in the fall we had a lengthy test done that showed her pituitary gland wasn't functioning and had made the decision to wait for environmental and nutritional improvements before starting growth hormone shots. Well, her latest test revealed that it is coming back online. So she was suffering from psychosocial dwarfism from the terrible conditions in her orphanage. Paul was right to insist we wait. He is good at waiting and remaining calm during the wait. She has not gained any height since being home, but now, we can expect that she will.

iphones are fascinating ;)

Fascinating from this angle too...

Developmentally

We are seeing progress in M's physical and cognitive development. Generally she is being assessed at a 12 month old level. So we have gained between 3-6 months of development since she has been home. All of her sensory processing therapy is still underway and we are seeing improvements there as well.

She is getting so much stronger. More of her day is spent with her in an upright position rather than laying down. High kneeling is easy for her now, and she can hold that without support for about 30 seconds. She will pull to stand if her hands can tolerate the supportive surface. She can also lower herself back down from a standing position. We are working towards getting a gait trainer that will allow her to build her tolerance and technique for walking in a safe manner.

M
is really starting to babble now. Usually when she is playing with a
toy and she thinks no one is listening. None of the speech is directed in a meaningful manner towards anyone or anything. We are working on some sign language, but again she hasn't really made the connection. Her tactile aversion makes it difficult for me to form the signs on her hands.

Random other developments....she has used a pincer grasp, she has touched her food in curiosity, her eye contact has improved, she is starting to manipulate her tongue inside her mouth and performing some rudimentary chewing, on occasion she will follow a pointing gesture from us, looking in the general direction of the point, she is using both hands more frequently in a midline position, and my favorite: she is starting to smile in response to seeing us smile.

I look up most developments to see what typical age the development occurs. I looked up the smiling thing:"Infant smiles become a more complex and useful tool of social
communication between 8 and 12 months of age, with "anticipatory"
smiles: smiling and then turning toward another person, expecting to
receive a smile in return.

Although scientists can't be absolutely certain why anticipatory
smiling develops at this age, they have formed a hypothesis. Babies at
this stage of development have increasing strength and mobility, and are
able to sit and play apart from their mothers. They play, then they
look for their mothers, and their mothers look back and smile. They
begin to associate the happy arousal they feel during play with looking
for their mothers, and with their mothers' smiles. Before long, a baby anticipates the progression and offers a smile before looking in her
mother's direction, increasingly certain that mom will be looking and
will smile back. This is a simple but powerful lesson for a baby: that
her interior feelings can connect her to others, and can shape the
behavior of others.

Making these associations - between self and others and between
emotion and behavior - fuels the development of an infant's social
skills. By 8 months of age, with just a simple glance and expectant
smile, a baby declares that she is already a powerful communicator,
ready to enter and participate in our highly social world." - www.parenthood.com

Audiology

M had a sedated hearing test performed. The test came back normal, revealing that her auditory nerve is performing normally, and taking the signals all the way to her brain.

Other Clinical Areas

We are followed by 14 different specialists at Children's Hospital. Every 4 - 6 months we will continue to meet with them. This latest round did not reveal anything notable, and mostly involves me telling them what progress I see. If we see M ceasing to develop in any area, they will be available for consultation. It makes for a lot of appointments, but at least, they will be ready.

Enough Business Talk

So, how is it going, like... for real? Hmmmm, in some ways better than expected, in others, we are letting go of what our expectations were and simply walking it out.

Paul and I looked at each in mid January and said "It isn't getting better. It isn't slowing down. It may not slow down for years, if ever. We are exhausted." Reflecting on the past seven months, I realized that since M had been home I had been operating in an urgent manner. Perhaps it was the unexpected admission to the hospital when she first came home, and then the eating problems, and the doctors searching for reasons other than neglect for her development, her seizures worsening, somewhere, along the way I developed a mentality of "we have to hurry and figure it out, give her the opportunity to get 'better' quickly, and make up for lost time." This mentality wore us out.

In pursuit

So with some of these realizations, we decided to take a trip to Disney World. Grin. We had wanted to take our little ones the previous year, but we were in the midst of adoption fees. Then we thought we would wait till M was home and "better." M was going to have more procedures starting in March, and while we hoped that they would reveal no new diagnoses, but realizing life could continue to evolve, we decided to go at the end of February. M did great and our other two children made lots of memories! So much better than we planned for. We had purchased noise dampening headphones for her, I had made a weighted blanket, and then we took darkening blankets for over the top of the stroller. She could be in a sensory deprivation state when needed and we could adjust the level of stimulation. Extended family joined us for a visit and to lend extra hands. It was interesting to see how she liked some of the rides. Frequently, we needed to keep the headphones on, but the slow boat or tram rides that rock and bump at times, she would actually giggle and clap.

Enjoying the ride,

smiling,

clapping!

Being back at home on the other side of our vacation, we are trying to adopt a different mode. A marathon mode, not a sprint mode. It doesn't mean we are planning on less appointments or procedures, but rather a different philosophy. I recently read Ann Voskamp's post "When You are Finding It Hard to Keep Up (Chased by Grace)," and it really resonated with our existence and the future we see before us. As we pursue a future for M, and with M, we have to trust that we too are being pursued by His goodness and mercy, and that that duo is going to get us before anything else. And in a practical sense, we are in a state of evaluation within our home. For the first time, I am having a responsible young lady come in to my home once a week after school and watch my other two children, while I care for M and accomplish something. I am thinking about our homeschool routine and how that needs to more integrated and tended to. We are making time for exercise for Paul and I, as a stress relief for us both and, for me, to remain strong enough for lifting M. Praying about the new normal with M, not for the old normal plus M, is a new philosophy.I have posted before about attachment and bonding with M. Changes in that area? I think so. M allows her hand to linger on our hands or arms more now when she is being held. I can touch her hand if she is distracted a little before she immediately pulls away. She has started directing some smiles at us, but hasn't laughed at us yet. She reaches for me during therapy sessions when it gets overwhelming.

First Thanksgiving

My feelings for M are evolving too. I want to tell you that I felt complete love for M from the very beginning. I thought I would, but I didn't. I don't believe it was a strictly adoption versus biological problem. I believe it was the institutionalization. It was M's reaction to our advances towards her that made it more difficult for me. I knew what the books said, "she may not be used to touch, she may not be comforted in the typical ways, she may not trust you...," but I didn't realize how that would make me feel when it was happening. I didn't realize how much I expected her to accept my love, so that I could keep loving her. I have referred to the situation as my little broken vessel. It wasn't until we started pouring love into her, that we could see all her little cracks from previous mishandling. Our efforts seemed to go through her completely. I started feeling like an amazing caregiver, but not her mother. A mother would know how to make their child feel loved. What to do in this scenario? Keep practicing love. That's all we could do. Try to modify the application of the love to suit her, but we had to practice. And now, we are starting to see those cracks fill in ever so slightly. Still, the worst times are when she is
obviously having a flashback or reliving a memory of some sort, and goes inward while outwardly projecting fearful screaming.
She almost can't see or sense us when she is that upset, she is somewhere else, and very terrified.

If our goal was to stop a single episode of crying, we could put her in her crib and know that she would comfort herself as she had done for years; this would seemingly be a success. And initially that had been our approach, because we didn't want to stress her out and take away her safety net. However, our goal isn't to stop the crying but rather help her process her grief, end her isolation, and restore her well-being. It reminds me of a scene from “Quigley
Down Under.” (Tom Selleck? Definitely, a blast from the past, but for
some reason, this is what I thought of.) Remember that scene
where the woman is protecting the orphaned baby from the dingos? Her
first instinct
is just to quiet the baby, almost smothering it. Then she gets her wits
about her and decides it is the dingos that have got to go. "If you
want to cry, you go on and cry. Hell, let's both make some
noise." The ghosts of M’s
dingos have to go. So recently, we are trying something else. When it goes into fullblown
core meltdown fear, we hold her. She goes into a pushing out of our arms raging
lunatic; still, we hold her. If we are together, bearing witness to her grief, taking the physicality of fear-turned-anger, and giving steady comfort in return, we hope she will be better able to process her journey to this point.

Letting her process her emotions in our
arms, is our goal, but it is gut-wrenching. For me, I can only imagine what she is crying out and trying to tell us, "It was so scary.""I was alone.""I was hurt.""Nobody listened.""I was hungry.""I was sick.""I didn't know what was happening.""Why weren't you there then?""How can I know it is over?" Showing her in those moments "there is nothing you can do, to make us leave or hurt you," takes more than us. It takes a really big God with a mighty hand on our shoulders, bolstering us to stand and listen to the sorrowful effects of depravity, and then bringing us back out of this onslaught still functioning. Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 2 Corinthians 1:3-4So that is the update. I hope that you can see what we see. Life is evolving. Life is harder. Life is much more beautiful!PS>I wanted to say one last thought, hopefully, encouraging. A thought that I mentioned to a friend at church and she said "you should share that!" So here goes... I have a lot friends and family that have recently had babies. They are doing the up all night, dog tired, thing. Sitting and feeding and holding their babies. And if they are like me, they may be frustrated. I remember thinking with my newborns, I have so many other things to do, I am not accomplishing much sitting here. With M, I have gotten to see first hand all the effects of what happens when what you ARE doing...doesn't happen. I know the emotional impacts of touch and meeting your childs needs are widely publicized, but in reality the impact is further reaching. I want to give you some examples of what you actually are accomplishing in your day.

Each time you nurse, your baby is building muscles that are going to allow for speech.

Each time you count their toes, they are realizing that they have feet, and one day will be able to walk without needing to look at them.

Each time you switch sides nursing you are helping their brain realize they have two arms and two legs to use together in completing tasks, as each side takes turns being pressed against you.

When you lift them to burp from lying down their inner ear, followed by their brain, is learning how to navigate changes in gravity and will help to keep their body balanced and oriented.

Allowing them to hold your finger or grasp your necklace will help them regulate pressure that is necessary to hold items, like a spoon or crayon.

Kissing their faces will acclimate them to scents and moisture that one day will be in their foods all over their faces.

All this is helping to build a successful, functioning, little person. So keep doing what you are doing, mamas!